Over the past few days I received quite a few emails from different people, asking me how I was doing (as I had not posted in a few days). I really appreciate this outpouring of concern and support!
In a previous post, I had mentioned that I was going to lower the pace of my blogging due to numerous reasons…so this is part of the reason why readers might not have seen many posts from me last week as they are accustomed to…but there’s more to the story.
To be honest, I am once again in the middle of a flare. My feet/ankles and hands/wrists are taking a beating, and every now and then my RA decides to pay a visit to a knee or an elbow or a shoulder. Early last week, I once again returned to the health clinic for an anti-inflammatory injection. Two days later, when things got worse (I usually get better two days after one of these shots), I returned for another injection. I am currently two days past this last injection, and am hoping that there is indeed a bigger improvement.
I’ve been trying to break away from the habit of labeling certain pain episodes as “the worst ever” (even though they would certainly qualify) because I don’t think it helps me move through these rough times. What I do try to do, though, is try to think about how long it’s been since my RA has been this active. (November.) This little mental activity allows me to more accurately asses my current pain, and also reminds me that I have been through this before and will get through it again.
This flare, however, is not the reason why I did not post much this last week.
A few months ago, at the beginning of September, I committed to taking a foreign language class at one of the local universities. The course met three times a week, and even though it was something I was definitely interested in, I was slightly hesitant at the thought of being able to actually attend something of this nature while living with rheumatoid arthritis that seems to peak on a frequent basis.
In the end, I proved that I was able to do even more than I had expected, despite my pain and disability.
The reason why I did not write much this past week, and why I will not be writing as much in the near future, is that I am once again going back to class in a couple of days. Unlike last semester, where I attended three times a week, this semester I will be attending five times a week. (Gulp!)
There is also one other major difference that I would like to share. This time around, I won’t be sitting in the classroom, taking notes…I will be standing up (as much as my RA allows me to) in front of the classroom, teaching the class! I will be teaching the Advanced English course at one of the local universities, with the possibility of teaching more design-related classes in the future.
So while my syllabus is complete and the course website is set up, I still have a lot of work to do – much more than I have had during the past year (discounting all the work and effort that was required to bring my rheumatoid arthritis under some semblance of control, of course). Am I (once again?) slightly hesitant with this commitment that I have made? Yes. I also have no doubt, however, that a few months down the road I will once again be able to look back and smile at what I was able to accomplish.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Earlier today, a good friend asked for a “pick-me-up”. I turned to today’s date in Revelations: Latin American Wisdom for Every Day
A festive crowd at carnival in Salvador da Bahia, Brazil.A passing sound.
The fleeting sound of a profound miracle.
I am, of course, more than the mysterious flesh
in which someone once bought me into the world.-David Escobar Galindo
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A few months ago, Rheumatoid Arthritis Guy was thrilled when the National Rheumatoid Arthritis Society in the United Kingdom asked him if he would write an article for their upcoming magazine. Those of you who are NRAS members have more than likely already received your magazine in the mail…I mean, post. For the rest of us, I have included below the article that appears in the latest NRAS magazine. Hope you enjoy!
Living with rheumatoid arthritis can, at times, be a lonely experience. Though I continually try to share with those around me what I am going through, words alone will never be able to accurately describe the pain that this disease brings into my life. The erratic nature of this illness also makes it difficult for some people to understand the seriousness of my situation. If I put myself in their shoes, I can begin to see why. After all, if someone sees me walking around with relative ease during the afternoon, it might be easy to dismiss the challenges that I encountered earlier that day, when I was unable to get out of bed due to pain and stiffness in my joints.
Even though I use forearm crutches most of the time, the true extent of the damage that is taking place in my body is understood by only a handful of people: myself, my rheumatologist, my therapists, and those who are close to me in my life. While some of the joints in my hands and feet are beginning to show initial signs of joint damage, most aspects of my illness continue to remain invisible.
I have learned many important lessons in the years in which I have lived with rheumatoid arthritis, the most important of which has been to stay positive. For me, positive thinking combines hope for a better tomorrow with optimism that I will continue to make the most out of my life, tempered by the reality of what it means to live with a chronic and disabling disease. There are many moments when it seems like rheumatoid arthritis is working against my entire body. During these rough times, it is reassuring to find comfort in the knowledge that I can maintain control of my thoughts, and that I can use this positive thinking to carry me forward.
I have also learned the importance of connecting with other people who live with rheumatoid arthritis. For many years, the inherent loneliness of living with my illness was amplified by the fact that I did not know anyone else who lived with rheumatoid arthritis. During those flares when my rheumatoid arthritis was out of control, it was all too easy to think that I was the only person in the world who was dealing with this challenge. I now know otherwise. During the past year, I have met hundreds of other people who live with rheumatoid arthritis. We have communicated through websites, blogs, discussion boards, and support forums. I have been touched by each and every story that has been shared, and I am happy to know that I am no longer alone in my struggle.
I still felt like something was missing, though. You see, on top of living with rheumatoid arthritis, I am also a man. While there was a lot of personal and medical information that was available, I still struggled to find a male perspective of what it is like to live with rheumatoid arthritis. Combine this with the fact that many articles, studies, and reports are targeted towards women (who comprise a majority of the rheumatoid arthritis population), and it should come as no surprise that some of my feelings of isolation started to return.
Whether we like it or not, notions of physical strength and masculinity often go hand-in-hand. For me, this raises the obvious question: What does it mean to be a man who lives with rheumatoid arthritis? At times, I am unable to cut my own food or comfortably lift a glass of water. At times, I am unable to carry a bag of grocery items. At times, I am no longer the go-to person when it comes to moving a piece of furniture or carrying a heavy box into the other room.
On top of this, I am in my 30’s – which many people think should be the prime of my physical life. What does it mean to be a disabled man in my mid-30’s, who has to use crutches in order to walk around? Well, for many people this means that I must have injured my ankle while playing soccer over the weekend. Even in illness, I continue to have societal expectations of what it means to be a man placed on me. Most of the time I found myself going along with this role-playing instead of explaining that I do indeed live with rheumatoid arthritis, but I think that I am going to start changing my response. Next time I am asked what sport I was playing when I injured myself, I just might answer: I got into a cage match with my immune system, and my immune system seems to have won!
When I ask myself what it means to be a man who lives with rheumatoid arthritis, redefining what “strength” means allows me to get closer to the answer that I am searching for. Some days, being strong means powering through yoga class at the gym. Other days, being strong means taking care of myself by not forcing myself to do any physical activity beyond walking around my house. Being strong means asking for help, whenever I need it. Sometimes, I need physical support: assistance getting out of the bathtub, or a helping hand when putting on my sweater. Sometimes, I need emotional support: encouragement to smile during a particularly bad moment, or being able to release the wide range of emotions that I encounter on a daily basis. (Anyone who says that men don’t cry has either never met me, or has never lived with rheumatoid arthritis!)
The last part of trying to figure out what it means to be a man who lives with rheumatoid arthritis is, simultaneously, one of the most difficult things to do and one of the easiest things to do. For me, it comes down to not being bothered by the looks that I often receive. There is the look of surprise, when someone walks up to the weight-training machine after me and sees how much (or how little, actually) weight I was lifting. There is the look of annoyance, when I ask to be pre-boarded at the airport and I am perceived as not wanting to wait my turn in line. There is the look of anger, when it is assumed that I am not contributing my fair share when it comes to lifting or carrying certain items. All of these looks, and many others, have one thing in common: they usually come from people who do not know that I live with rheumatoid arthritis. While they might think that I am weak, deep down inside I know that I am strong. This is what matters.
All of us who live with rheumatoid arthritis can work to change these attitudes and perceptions. If we continue to share our stories and talk about what it means to live with rheumatoid arthritis, awareness will continue to grow. If we continue to be open about the physical and emotional challenges that we face on a regular basis, then maybe – just maybe, others will start to see our ability to accept the limitations that rheumatoid arthritis brings into our lives as a sign of personal strength.
-Rheumatoid Arthritis Guy
National Rheumatoid Arthritis Society provides support and information for people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis, their families, friends and carers, and health professionals with an interest in Rheumatoid Arthritis.
More Info: www.rheumatoid.org.uk.
Somnambulance. Some people walk in their sleep. Rheumatoid Arthritis Guy has never had this problem, although it seems like he’s started doing something else in his sleep for which there is still no name. I’ve started acting like a contortionist while I sleep. When I wake up, the first thought on my mind is often “What pretzel have you wrapped yourself up in now?”
Of course, it is my rheumatoid arthritis that is twisting me into these fun shapes. It seems to be having a lot of fun on my hands and feet. I continue to learn just how many different directions a group of five fingers can point in. My wrists continue to sound like crunchy cellophane in the morning. Really thick crunchy cellophane.
(Speaking of pretzels, does anyone remember those large shopping mall pretzels that were both illuminated and warmed up with a huge heating light? Some of them had rock crystals so large that if they were slightly polished, they could be mounted on a ring. What was up with that? And while I am at the mall, I can’t forget those horrible outfits that the people who worked at Hot Dog on a Stick had to wear.)
So I guess it’s time to once again take out my lovely forearm wrist braces, that actually prevent a lot of this twisting and turning that takes place during the night. I also have a pair of ulnar deviation gloves. (That’s a mouthful.) They have a strap that wraps around each individual finger. They do a really good job…sometimes so much so that I can only wear them for an hour. You see, when my hands are pulled back into their “correct” position, they are no longer in their “natural” position…and that can really hurt.
Now if I could only do a one-armed handstand!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
The 2009 Medical Weblog Awards Sponsored by Epocrates
Fellow RA bloggers RheumaBlog and ∞ itis have been nominated for Best Patient Weblog. Please be sure to visit medGadget and vote today! (You are allowed to vote once a day, so please show as much support as possible to these two individuals who do such a fine job of representing the RA blogging community!)
Real Profiles of Rheumatoid Arthritis
POLLYANNA PENGUIN
Photos © Pollyanna Penguin
Name?
Pollyanna Penguin a.k.a. Anne but prefer Penguin (or Polly occasionally!)Age?
41Location?
Nearest city is Norwich, Norfolk, UK, although I live in a small town outside Norwich.How long have you lived with RA?
Good question. Diagnosed in 2007 but I’m sure I’ve lived with it for longer than that!What advice would you give to someone who has just been diagnosed with RA?
1. Read up everything you can about it, but don’t assume that everything you read applies to you. Everybody’s experience of RA is different. 2. Don’t be afraid to try the drugs because of possible side effects. For a lot of people they work and work well; those are the people you tend not to hear from because they’re busy getting on with their lives! 3. Educate your family and friends about it – they can’t read your mind and they won’t know what you’re going through. Don’t assume they aught to just pick it up by telepathy. (It’s very easy to assume that, especially with people you’re really close to.)Do you use any mobility aids?
I have a cane in the car but almost never need to use it these days.How has living with RA helped to improve your life?
It’s made me make the most of the good days and it’s also made me pace myself, which means I have forced myself not to be a complete workaholic any longer. It also got me an excellent free trip to Barcelona! (See www.mydayforRA.com)Do you have any visible signs of RA?
Only if you look really, really carefully! Slightly off kilter toes but I’ve seen worse on people who haven’t got RA, and slightly bent index fingers.Can you please describe some of your favorite coping strategies for living with RA?
Cuddling the cats, ranting at my hubby, cuddling my hubby (often post rant!), living one day at a time, making the most of the good days, focusing on the positives, writing my blog (which has really helped me to focus on the positives … as well as occasionally rant about the negatives)Can you please describe your current medical (traditional and alternative) treatments?
Methotrexate 15mg, hydroxychloroquine, Arcoxia (an anti-inflammatory), folic acid (to counteract mtx side effects, presumably works as I don’t have any side effects!). I also take 5-HTP (a herbal remedy that’s supposed to balance seratonin and help with mood swings and sleep) to help counteract the fibromyalgia I also have.Is there anything else about yourself that you would like to share?
I am very happily married (inspite of above mentioned rants) with three cats: Enormous Cat, Middle Sized Cat and Tiny Cat. The latter is more usually known as Nollie (her official name) or Noodle (because she has the brains of a noodle, or because she looks like a noodle, although based on the latter I have started calling her Ravioli, as she’s ‘filling out’ rather too much). I am slightly cat obsessed – guess you guessed that. I also love doing embroidery and other crafts when hands allow, and going for country walks when feet allow, delving into natural history (especialy entomology) and photography (especially of entomology, but also landscapes, trees, stuff generally). I work full time but not as full as I used to!
Pollyanna blogs regularly at Pollyanna Penguin’s RA Blog.
Read more Real Profiles Of Rheumatoid Arthritis.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I think most of us are familiar with the milk bottle carnival game. A number of glass milk bottles are stacked in a pyramid, and players must knock all of the bottles of the platform with the throw of one (or three?) baseballs. Some people claim that this game can be easily rigged, by making one bottle heavier than the others. Either way, this game is the source of much amusement and empty pockets, as players try repeatedly to clear the platform of milk bottles. (And once they finally do, they are often surprised to find out that their prize is not one of the huge stuffed animals hanging overhead, but it instead a rinky-dink prize from under the counter that must be “traded up” to a larger prize.)
Looking back at 2009, it feels like my life could easily be represented by this stack of jars. In my case, instead of a baseball knocking all of them clear off the platform, it was my rheumatoid arthritis that did all of the work. As expected, the prize was minimal to none. And unlike the carnivals or state fairs where the area below the platforms is well padded, my jars fell straight onto the concrete ground. To say that some of them shattered into tiny little pieces is an understatement.
My first step forward, after months (some might say years) of continuing to step on the sharp pieces of glass, was to finally survey the damage around me, and to admit that it needed to be cleaned up. Looking back at the past year, I realized that this was a critical moment during my journey with rheumatoid arthritis. Even though I still had a lot of recovery to accomplish, I had at least turned my sights around from the fearful unknown to the positive present…and while I did not know it at the time, this counted for a lot.
I started deciding which milk bottles were most important to start piecing back together, and ended up with “physical health” and “emotional health”. This was not easy – sometimes the total number of hours that I dedicated on both of these issues totaled up to more than a full time job – but it was possible. My physical therapy sessions have been reduced from 3x a week to 1x a week maintenance mode. My therapy sessions with my psychologist have been reduced from 1x a week to an on-call basis. This effort took months, and many times it was hard to see some of the results, but looking back I am glad I stuck with prioritizing my physical and emotional recovery above all else.
After I started gluing the pieces back together, I often assumed that a lot of the cracks in the glass would be permanent. I am happy to find out, however, that some of the scars DO heal.
The milk bottle labeled “personal finances” has still not been fixed, but now that I’ve worked on some other milk bottles, I can dedicate a large part of this year to working on this next project. I only recently started surveying the damage, but as the previous examples showed me, this is a critical step for moving forward. While my current income still does not cover all of the expenses, it is much better than where I was last year, when my income for many months was zero. I am currently working on various leads at the moment that will hopefully get me closer to where I want to be. I no longer dream of riches. I would be more than happy with a comfortable income that covers my living expenses, my medical expenses, and a little allowance on the side. I have no doubt that I will soon be there.
And though I did not want to admit it, the milk bottle labeled “marriage”, which continued to appear to remain so strong, started showing some cracks as well. (Luckily, this was one milk bottle that did not shatter into a million little pieces.) A few months ago we recognized this situation, and started putting the effort that was required to not only stop the cracks, but to heal the scars as well. (Including, but not limited to, couples counseling.)
2009 was the year of fixing two milk jars: physical health and emotional health. When this new started a few weeks ago, I decided that 2010 was going to be the year of fixing another two milk jars: personal finances and marriage. After I get all of my milk bottles back into place, I am sure that they will be even stronger than they were before, so that they are not so easily knocked over once again in the future.
In order to fix these remaining milk jars this coming year, I will need to spend less time online. No, Rheumatoid Arthritis Guy won’t be going away completely, but I also won’t be able to continue making daily appearances as I have done in the past. While it’s great to be able to feel like a superhero here on my blog, it’s even more wonderful to feel like a superhero over in my daily life, out in the real world.
Plus, I hope to – one day – finally get that really big stuffed animal that is hanging overhead!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Because there is no such thing as taking too many breaks!
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Today (January 24) is Alasitas, or festival of the Ekeko. Don’t know what an Ekeko is?
“In the mythology and folklore of the Aymara people of the Altiplano, a high plateau region which spans parts of Bolivia, Chile, Ecuador, Peru, and Argentina, Ekeko is the god of abundance. Its origin predates the arrival of the Spanish people to America, as one of the gods of Andean culture, but its current form was born in La Paz, Bolivia. Antonio Díaz Villamil included the Ekeko’s legend in his work “Leyendas de mi tierra”. Ekeko is depicted as a man with a mustache wearing traditional Andean clothes (especially the poncho) and completely loaded with bags and baskets with grain and food, (compare with the cornucopia of some Greco-Roman deities), household objects, and currency bills, and basically anything that a person is thought to want / need to have a comfortable and prosperous life ; he is commonly found as a little statue to be put in some place of the house, preferably a comfortable one, but also as an amulet holding from key rings; modern statues of the god include a circular opening in his mouth to place there a cigarette (better if lit) for Ekeko’s pleasure. Latest tradition has the ekeko “smoke” a lit cigarette (hence the rounded mouth) once a year to ensure a full year of prosperity.”
Read More: http://en.wikipedia.org/wiki/Ekeko
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Since the Dallas Cowboys are out of the playoffs, I don’t know who to cheer for now. I think I’ll hope for an underdog Superbowl: New York Jets versus Minnesota Vikings.
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I’ve been having a lot of Hobbit-esque adventure dreams this past week. (Yes, I am reading the book.) It’s been good to have something other than my RA get to my sleep dreams!
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Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
